Reclaiming the body and soul

Black and white image of a female Indonesian with short hair, earrings, black shirt and batik, laying while holding a pen, writing. Photo credit: Derrick Kakembo.

At first, Perdana Putri meant to have a chat on anti-colonial literature with Khairani Barokka. Yet Okka took her beyond the initial topic and forced us to rethink a range of different issues, including disability justice. Here is the full interview


How were you initially exposed to anti-colonialism, and what drove you to further explore the concept?

Since I was little, I’ve been exposed to activism in Indonesia—especially environmental activism and indigenous activism—so I grew up having connections in those fields through family and close friends. What changed when I was working on my PhD was the way in which I could articulate the differences between anti-colonial movements and decolonial movements.

I currently work at the Decolonizing Art Institute, which focuses on decolonizing the (art) curriculum. There has been much debate over the concept of decolonization/decolonizing, and it’s also been heavily coopted. It’s common practice to simply replace the curriculum with syllabi full of white men or even books by white feminists of the colonial suffragette era. So even within circles concerned with decolonization, I still feel the need to keep educating my colleagues, and I also always end up learning something new in the process.[MOU1]  The suffragettes were still colonial and deeply racist—just because white women were liberated, it didn’t mean the colonies were. I also think that colonialism isn’t over, and it has never ended because “developing countries” continue to be deemed as anything but “advanced.” I’m so fed up with terms such as “advanced countries” and “developing countries.” We’re not poor; we’re exploited.

There is a failure to critically understand that countries are still being colonized to this day, especially under colonial capitalism. We talk about decolonization, but our own understanding of Indonesian culture is still filtered through the western bule perspective. We still lack a clear anti-colonial understanding of the nation-state, in that it is inherently colonial. The way I see it, the Indonesian government is separate from the groups of people and the population who live under its rule.

To even begin talking about anti-colonialism, we also have to talk about Papua, Kendeng, the events of 1965, Kamisan, as well as the destructive systems that allow the Omnibus Law and similar things to exist. Decolonization has become toothless—it’s become much too soft. It’s like, “Ok, let’s include everything.” This is the tendency of the neoliberal cultural complex that wants to include everything and everyone, including disabled women.

Many things such as the annexation of Papua is often done under the guise of “anti-colonialism,” but it appears to be another form of cooptation as you mentioned earlier. Your research tackles this within the framework of disability justice. Can you tell us a bit about the concept?

So the term disability justice was coined by Sins Invalid, a group of queer, brown and black artists. There are 10 principles of disability justice, one of them being anti-capitalism.

My aim is to decolonize that phrase in order to reclaim the true meaning of “body and soul” (jiwa raga) that’s found across the hundreds of cultures in Indonesia, as well as what makes a “good” (and “healthy”) body and soul. The concept doesn’t only concern disability, but it also concerns all of us. What does it mean to be smart, good, and strong? What are those labels for? Consider the word able. It refers to a person’s capability, but only as it relates to the tasks demanded by colonial capitalism. Therefore, if you’re unable to perform as a worker under that system, then you are not able. A friend of mine, Slamet “Amex” Thohari, writes about disabled goddesses in his book Disability in Java. When the Dutch established Christian hospitals, the view that disability brought you closer to God was eradicated. And it has only gotten worse since.

According to the International Labor Organization (ILO), 43–60% of disabled people in Indonesia did not complete their elementary education; meaning that their level of formal education is very low, especially among women. This data isn’t so accurate, as the percentage of disabled people in Indonesia is under 20%.[1]

Decolonization means reclaiming what it means to have a good body and revealing that it is imbued with the neoliberal logic, especially when it comes to concepts such as inclusivity and diversity.

The United States and the United Kingdom, for example, use such jargon to talk about disability, but at the same time they contribute to the maiming of Palestinians. In The Right to Maim, Jasbir Puar reveals neoliberal models found within the concept of disability: becoming pro-disability rights while simultaneously maiming others. There is a difference between disability rights, which neatly fit into the neoliberal framework in “advanced countries”, and disability justice. Redefining the concept of body and soul is very important, and its meaning has to be localized. Questions such as: what is this body for? Why do we call others “stupid” or “weak”? What do even mean by ability? I try to address such questions through art.

You and I currently live in the metropole, in the imperial core. How should we navigate such contradictions, especially in our pursuit of disability justice?

It’s important to remember that disability justice is linked with environmental issues. Everything we consume under capitalism always comes at the expense and suffering of others. Take palm oil for example. What is consumed by disabled people is tied to the people who became disabled because of mercury exposure along the rivers of Kalimantan. But even in the metropole, accessibility isn’t always easy. Here, you would still hear people say things like, “Oh, you don’t look disabled.” I don’t like the term invisible disability. How is it invisible when I have to squat every time I walk a few steps? I experience chest pain after a short walk up a hill. But assumptions about (what is seen as a) disability always comes first, especially among women. Many disabled women are too scared to open up, obviously because of the rampant ableism you would find in academia and everywhere else. There’s a long history of ableism as it relates to the fine arts industry and visual arts.

I’m certain there many chronically-ill women in the world, but they have never admitted it. Menstruation, for instance, is serious and studies have shown that the level of pain is identical to the degree of pain felt after being hit by a car. But of course, women would then be accused of being attention seekers, liars, or whiners. Black, brown, and other ethnic minority women have it even worse in “Western” countries. Stocks are still being used in Indonesia. This practice is a remnant of the violent colonial era: people who aren’t “normal” have to be exiled and treated badly.

What we can do is build solidarity and try to help each other because there’s still a lot of racism even in disabled communities. White women tend to speak for everyone even though women of color tend to be more vulnerable to chronic illnesses. In the UK, for example, there are a lot of disabled people who come from South Asian backgrounds as result of a variety of factors. There are statistical discrepancies—those who claim they are disabled and those who are actually the most affected. Apart from that, there’s also a lot of stigma and racism in medicine, even though not all disabilities stem from diseases. The language that we use can also further complicate the problem. Attaching words such as “blind” or “deaf” to certain expressions, or calling something or someone “stupid.” We have to learn from each other and avoid making assumptions about other people’s lives. We have to prioritize and move forward in solidarity with disabled communities because unfortunately, in Indonesia, many still tend to act based on a sense of pity.

To what extent has Indonesian literature approached disability and/or anti-colonialism?

It’s impossible to claim that we know everything that’s ever been written in Indonesia, considering there are over 700 languages. It would be incorrect to only recognize works written in Bahasa Indonesia as Indonesian literary canons. What about the literary cultures of Papua, Manado, and Jambi? We can’t generalize “Indonesian literature” because there’s so much we haven’t learned about and read.

Oftentimes the problem is also rooted in archiving and distribution. When I was in Pekanbaru, I had a chat with Komunitas Disabilitas (Community of Disability) and took part in their radio show. It turned out they had a lot of radio sessions that weren’t recorded. Another example is Sign Language, which remains excluded from literature altogether. Up until now, there’s still a huge gap between the language of disability and “abled” language in Indonesia. Such generalizations have to be resisted in the metropoles, as well as in cities like Jakarta or even patriarchal art circles that tend to say, “Oh, this is literary canon.” Such examples of imperialism and patriarchy can be found everywhere, in art and literary communities that say, “We don’t speak that language, or read books or short stories from other communities.” Just because we don’t read them, it doesn’t mean they don’t exist.

What are your thoughts?

I also haven’t read every literary work in Indonesia, but I think it’s important to scrutinize the narrative contained in a story, and how we connect that narrative to the power structures we try to counter.

Coincidentally I was a mentor in the Ceritrans program along with Eliza, Intersastra, and House of the Unsilenced. There are many transwomen who are disabled, but because they are the main breadwinner, they have to go into prostitution, the sex trade, and work at massage parlors. While their work isn’t always miserable, they are still at risk because the sectors they work in aren’t protected yet. They become even more vulnerable. Disabled people and transwomen have to be the ones who control the narrative, otherwise they’ll only be seen as objects of pity.

In art communities, the concept of “care” is often used in the process of creating works of art and nurturing communities.

Yes, but it tends to be misused. For instance, at a conference that was supposed to focus on care and community in the arts, not a single black panelist could be found even though it was during the height of the Black Lives Matter movement. One of the participants said that they wanted there to be a black speaker. What ended up happening instead was white members of the committee received access to art therapy while black members got free therapy. Nobody asked for therapy. We wanted justice. So what does “care” even mean? Why is there a tendency to assume that all black people need therapy?

That happened at a conference on care, and that’s how they interpreted care. It shows how necropolitical capitalism is still found in spaces of care. Concepts of care and decolonization have become deeply coopted. [That conference] paid more attention to white people who actually quoted black writers such as Audre Lorde, Angela Davis, and members of the Black Panthers. This is citation politics, but it’s geared towards capitalism.[MOU2] 

I appreciate the well-kept secrets of Indonesia because they stop our ideas from being coopted. We have a right to reject translation and inclusion. Because at the end of the day, the question still remains: included in what?

Translation (of texts) can also be incredibly intrusive and colonial.

Exactly. I talk about secrecy in my residency research. The practice of “collecting” is serious. The British Museum states that their collections come from “field collectors”—but what they really mean by that is people like Thomas Raffles. That information conceals all the brutality and violence that happened.

This [practice of collecting] is just another part of the surveillance state, right? All of our data (information, text, knowledge) has been taken. Academia also partakes in this mode of collecting. We can’t talk about “decolonization” if we only end up rebranding the “Enlightenment.” Many indigenous communities around the world refuse to be translated—and that is a crucial right.


[1]  Statistics Indonesia (Badan Pusat Statistik) reports that roughly 4.3% of the Indonesian population are disabled; WHO and ILO doubt this claim as their research points to a much higher percentage (10–15%).

Mengklaim kembali arti jiwa raga

Khairani Barokka
Foto hitam putih seorang perempuan Indonesia dengan rambut pendek, anting-anting, dan baju hitam dan batik, sedang tiduran menghadap lantai sambil menggenggam pena dan menulis. Fotografer: Derrick Kakembo.

Awal mulanya Perdana Putri, mewakili redaksi Siasat, berniat untuk berbincang dengan Khairani Barokka soal sastra anti-kolonial. Tetapi Okka menjelajahi banyak topik yang tidak diduga dan memaksa kita untuk memikirkan ulang banyak hal, terutama soal keadilan disabilitas. Simak obrolan mereka berdua.


Bagaimana Okka bisa terpapar konsep anti-kolonialisme dan menjelajahinya?

Aku dari kecil banyak terpapar dengan aktivisme di Indonesia, terutama aktivisme untuk keadilan lingkungan hidup, aktivisme untuk masyarakat adat, jadi aku tumbuh besar dengan banyak kontak melalui keluarga dan teman terdekat di lingkup itu. Jadi yang berubah pada waktu aku S3 adalah cara aku bisa mengutarakan perbedaan-perbedaan antara gerak-gerak anti-kolonial dengan gerak-gerak dekolonial.

Aku sekarang bekerja di Decolonizing Art Institute, fokusnya di dekolonisasi kurikulum (seni), (konsep) dekolonisasi/decolonizing itu sangat diperdebatkan, dan sangat dikooptasi. Menurut pemahaman umum adalah, kurikulum itu kita ganti saja silabus dengan laki-laki kulit putih atau bahkan ada buku-buku feminis kulit putih (era) suffragette yang kolonial. Jadi di lingkup dekolonisasi pun, aku masih harus banyak mengajar kolega-kolega tentang, dan tentu saja aku juga selalu belajar . Suffragette tuh masih kolonial dan rasis banget; dengan adanya pembebasan perempuan kulit putih bukan berarti ada pembebasan di koloni-koloni. Aku juga berpikir bahwa kolonialisme tuh nggak berakhir, masih belum berakhir, karena negara-negara yang “developing countries” masih (dianggap) belum ”maju.” Aku kesal dengan istilah “Negara maju” atau “Negara berkembang”. Kita kan nggak miskin, kita kan dieksploitasi.

Belum ada pemikiran kritis bahwa negara-negara itu masih dijajah, terutama di kapitalisme kolonial. Kita bilang dekolonisasi, tapi kita ikutsertakan budaya-budaya Indonesia di dalam pemahaman bule barat dan belum ada pemahaman anti-kolonial bahwa konsep negara-bangsa (nation-state) sangat kolonial. Aku melihat Indonesia sebagai pemerintahan terpisah dari Indonesia sebagai kumpulan manusia-manusia dan populasi-populasi yang dinaungi oleh Pemerintahan (tersebut).

Untuk berbicara mengenai anti-kolonialisme, harus juga berbicara mengenai Papua, Kendeng, peristiwa 1965, Kamisan, dan berbicara mengenai sistem-sistem yang terus merusak seperti Omnibus Law dan lain-lain. Dekolonisasi malah menjadi sesuatu tanpa gigi — jadi sangat halus. Yang sangat, “Oke, kita ikutsertakan semua. Ini neoliberal cultural complex (industri budaya neoliberal) yang mau masukin semua hal, termasuk seperti perempuan penyandang disabilitas.

Banyak hal seperti aneksasi Papua itu dilakukan dalam jargon “anti-kolonialisme,” padahal itu bisa jadi bagian kooptasi seperti yang Okka sampaikan. Riset Okka membahas ini dengan kerangka kerja Keadilan Disabilitas. Bisa jelaskan tentang konsep itu?

Jadi konsep Disability Justice atau Keadilan Disabilitas itu adalah frasa yang dibuat oleh kumpulan seniman penyandang disabilitas yang queer, kulit cokelat, kulit hitam, namanya Sins Invalid. Ada 10 Prinsip Keadilan Disabilitas, termasuk diantaranya Anti-Kapitalisme.

Aku ingin mendekolonisasi frasa itu untuk mengklaim kembali arti “jiwa raga” dari budaya-budaya di Indonesia, ada ratusan budaya; dan apa artinya jiwa raga yang “baik” (juga “sehat”). Karena konsep itu tidak hanya soal disabilitas, tapi kita semua. Apa yang kita disebut pintar, bagus, kuat, dan untuk apa semua label itu. Able artinya mampu. Tapi kemampuan itu ditakar dengan kapabilitas untuk tugas-tugas dalam kapitalisme kolonial. Jadi kalau kamu nggak mampu bekerja sebagai buruh di dalam kapitalisme-kolonial, maka kamu nggak mampu. Dan temanku, Slamet “Amex” Thohari dalam bukunya Disability in Java membahas dewa-dewi yang memiliki disabilitas. Begitu masuknya rumah sakit-rumah sakit Kristen Belanda, pandangan bahwa disabilitas itu lebih dekat ke Tuhan dimusnahkan, dan sekarang situasi itu memburuk di Indonesia.

Menurut International Labor Organizatio (ILO), 43-60% penyandang disabilitas di Indonesia itu tidak tamat SD; jadi pendidikan formalnya amat rendah terutama yang perempuan. Ini data juga tidak terlalu ketat. Penyandang disabilitas di Indonesia itu ada di bawah 20%.[1]

Dekolonisasi berarti mengklaim ulang apa artinya badan yang baik, dan menunjukkan bahwa ada logika neoliberal di sana, apalagi dengan konsep-konsep seperti inklusivitas dan keanekaragaman.

Amerika Serikat dan Inggris misalnya menggunakan jargon-jargon tersebut untuk bicara disabilitas, tapi mereka berkontribusi untuk melumpuhkan orang-orang Palestina. Jasbir Puar dalam The Right to Maim membuka model-model neoliberal dalam konsep disabilitas: menjadi pro-Hak Disabilitas, tapi di satu sisi melumpuhkan orang lain. Ada bedanya antara Hak Disabilitas yang sangat mudah untuk diikuti bingkai kerja neoliberal di “negara maju” daripada Keadilan Disabilitas. Memaknai ulang jiwa raga itu sangat penting, dan maknanya harus dilokalkan. Pertanyaan-pertanyaannya seperti: badan ini buat apa? Kenapa kita memanggil orang lain “bodoh,” “lemah”? Memangnya apa yang kita maksud dengan abilitas? Aku menghadirkan pertanyaan tersebut dengan seni.

Aku dan Okka saat ini tinggal di Metropol, di pusat kekuasaan kolonial. Bagaimana sebaiknya kita menavigasikan kontradiksi-kontradiksi tersebut? Terlebih untuk membangun Keadilan Disabilitas tersebut.

Penting untuk mengingat bahwa Keadilan Disabilitas juga terkait dengan isu lingkungan hidup. Semua konsumsi kita, di bawah kapitalisme, tidak ada yang bebas dari darah orang lain. Kelapa Sawit misalnya. Konsumsi kita yang penyandang disabilitas berhubungan dengan orang-orang yang menyandang disabilitas karena paparan merkuri di sungai-sungai Kalimantan. Tapi bahkan di Metropol pun, akses disabilitas tidak selalu mudah. Di sini orang-orang masih bisa bilang, “Oh kamu gak terlihat disabled.” Aku tidak suka istilah disabilitas tak terlihat (invisible disability). Apa maksudnya gak terlihat? Setiap aku jalan berapa langkah, aku harus jongkok – jalan, lalu jongkok lagi. Jalan sedikit lewat bukit kecil, sampai sekarang dadaku masih perih.  Tapi asumsi tentang (apa yang terlihat soal) disabilitas itu selalu hadir lebih dulu, apalagi untuk perempuan. Banyak penyandang disabilitas perempuan yang gak berani terbuka, tentu karena ableism yang luar biasa di mana-mana: dari akademia hingga industri-industri lain. Misalnya ada sejarah panjang soal ableism ini, dan terkait dengan industri seni rupa dan kesenian visual.

Aku yakin ada banyak perempuan yang punya penyakit kronis di dunia, tapi mereka gak bilang. Hal-hal seperti menstruasi misalnya, itu serius dan penelitian bilang sakitnya hampir sama seperti ditabrak mobil. Tapi pasti dikira mencari perhatian, bohong, bawel. Lebih-lebih lagi kalau perempuan kulit hitam, cokelat, atau etnis minoritas lainnya di negara-negara “Barat” ini. Di Indonesia masih ada praktek dipasung. Ini kejahatan imperial dari era kolonialisme: bahwa manusia-manusia tidak “normal” harus diasingkan dan diperlakukan buruk.

Yang kita bisa lakukan adalah dengan bersolidaritas – berusaha saling membantu. Toh dalam lingkaran disabilitas masih banyak juga rasisme. Perempuan kulit putih jadi juru bicara untuk semua orang, padahal yang lebih rentan didiagnosa penyakit kronis adalah yang kulit berwarna. Di Inggris misalnya, yang paling mungkin menjadi penyandang disabilitas adalah dari Komunitas Asia Selatan karena banyak faktor. Ada ketimpangan statistik — siapa yang menyatakan diri disabilitas dan siapa yang paling terdampak. Hal lainnya ada stigma dan rasisme di dunia medis, walau bukan semua disabilitas adalah penyakit. Tapi masih yang salah di dalam penggunaan bahasa kita, misalnya “wah buta/tuli [terhadap suata hal].” Atau “bego.” Kita harus saling belajar satu sama lain, dan tidak berasumsi mengenai kehidupan orang lain, dan bergerak secara solider dengan mengedepankan yang disabilitas karena di Indonesia sayangnya masih berbasis hibah dan rasa kasihan.

Di ruang seni, bagaimana sejauh ini Sastra Indonesia berbicara mengenai disabilitas dan/atau anti-kolonialisme?

Kita tidak bisa klaim bahwa kita tahu semua apa yang ditulis di Indonesia, dengan bahasa-bahasanya yang ada lebih dari 700. Jadi kalau ada yang bilang ini Kanon Sastra Indonesia hanya itu berbahasa Indonesia, ya tidak benar juga. Bagaimana sastra di Papua, Manado, dan Jambi? Kita tidak bisa menggeneralisasi “Sastra Indonesia,” karena banyak yang belum kita ketahui dan baca.

Tapi seringkali masalahnya kan juga pengarsipan dan penyebaran. Misalnya waktu di Pekanbaru, aku ngobrol sama Komunitas Disabilitas dan ikut acara radio mereka. Rupanya mereka sudah sering bikin sesi radio tapi gak pernah direkam. Contoh lainnya Bahasa Isyarat yang tidak dianggap bagian dari sastra. Sampai saat ini juga masih ada kesenjangan antara berbagai bahasa disabilitas dengan bahasa yang “abled” di Indonesia. Generalisasi seperti ini juga harus dilawan, baik di Metropol, maupun pusat seperti Jakarta ataupun pusat-pusat kesenian patriarkal lainnya yang bisa bilang, “Oh ini kanon sastra.” Di mana-mana ada imperialisme dan patriarki seperti itu, di komunitas-komunitas kesenian dan sastra yang “Kami tidak berbicara dengan bahasa adat itu, atau baca buku, atau cerpen-cerpen dari komunitas lain.” Hanya karena kita tidak membacanya, bukan berarti karya-karya itu tidak ada.

Menurut kamu gimana?

Aku juga belum membaca semua karya sastra di Indonesia, Tapi menurutku penting untuk melihat narasi apa yang ditawarkan di cerita. Bagaimana kita menyangkutkan narasi itu dengan struktur kuasa yang kita coba lawan.

Kebetulan aku jadi mentor untuk program Ceritrans bersam Eliza, Intersastra, dan House of the Unsilenced. Ada banyak transpuan yang juga penyandang disabilitas, tapi harus jadi tulang punggung keluarga, dan mereka masuk ke prostitusi, kerja seks, dan panti pijat. Bukan berarti kerja-kerja mereka selalu sengsara, tapi risiko yang mereka hadapi lebih besar karena sektor-sektornya masih belum dilindungi. Mereka semakin rentan. Narasi-narasi seperti ini harus datang dari kita sendiri – mereka yang penyandang disabilitas dan transpuan. Kalau tidak, mereka cuma sebatas jadi “rasa kasihan” tadi.

Dalam komunitas seni, konsep ”care”/peduli terus didengungkan sebagai bagian dari membangun karya-karya seni dan merawat komunitas.

Ya, tapi sering disalahgunakan. Misalnya di salah satu konferensi soal Kepedulian dan Komunitas di Kesenian, tidak ada satupun pembicara kulit hitam walaupun saat itu gerakan Black Lives Matter sedang kencang. Akhirnya salah seorang partisipan bilang bahwa dia mau ada pembicara kulit hitam. Yang terjadi malah panitia konferensi ini, yang kulit putih, diberikan akses terapi seni. Yang kulit hitam diberi terapi gratis. Tidak ada yang minta terapi. Kita minta keadilan. Jadi konsep “peduli” ini sebenarnya apa. Kenapa asumsinya semua orang kulit hitam butuh terapi?

Itu konferensi tentang kepedulian, dan itu cara mereka menerjemahkan kepedulian. Kasus itu menunjukkan bagaimana kapitalisme nekropolitik itu berada di ruang-ruang seperti kepedulian. Konsep kepedulian dan dekolonisasi ini sudah terlalu dikooptasi. [Konferensi tersebut] lebih memerhatikan orang kulit putih, yang padahal mengutip penulis-penulis kulit hitam seperti Audrey Lord, Angela Davis, dan anggota Black Panthers. Ini politik sitasi, tapi paparannya ke kapitalisme.

Aku cukup mengapresiasi rahasia-rahasia di Indonesia, karena itu menjauhkan ide-ide kita dikooptasi. Kita punya hak menolak untuk diterjemahkan/diikutsertakan. Karena pertanyaannya adalah: diikutsertakan ke dalam apa?

Model terjemahannya (terhadap teks) juga bisa sangat intrusif dan kolonial.

Benar. Riset residensiku membahas kerahasiaan ini. Praktik “mengoleksi” ini serius. Museum Inggris menulis bahwa sumber koleksi mereka dari “Kolektor Lapangan” – tapi ini maksudnya orang-orang seperti Thomas Raffles. Jadi informasinya menutup kebrutalan dan kekerasan yang terjadi.

[Praktik mengoleksi] ini kan bagian dari negara pengawas (surveillance state), ya. Semua data (informasi, teks, ilmu) kita diambil. Akademia mengambil model koleksi ini. Kita gak bisa bilang “dekolonisasi” kalau kerjanya cuma meraup filosofi “Pencerahan.” Banyak masyarakat adat di dunia yang menolak untuk diterjemahkan – dan ini hak yang penting.


[1] Data dari Badan Pusat Statistik melaporkan sekitar 4.3% populasi Indonesia adalah penyandang disabilitas; WHO dan ILO meragukan klaim ini dan angka temuan mereka jauh lebih tinggi (10-15%).